IPOPI launches Burden of Treatment Study with UK Kick-Off

IPOPI is pleased to announce the launch of a new Primary Immunodeficiency Burden of Treatment study in partnership with the University of Sheffield (UK) and a clinical research company, Parexel.

IPOPI is closely working with its National Member Organisations (NMOs) who will help disseminate the questionnaire in eleven countries.

IPOPI’s NMO in the United Kingdom, PID UK, is the first to launch the questionnaire today, Wednesday 27th April 2016, on the occasion of World Primary Immunodeficiency Week. ‘In World PI Week PID UK is delighted to be the first organisation to launch IPOPI’s burden of treatment survey. Understanding and being able to quantify how different immunoglobulin treatments impact the lives of those living with PIDs, and how this varies across the different nations will provide invaluable data to help all NMO’s lobby for equal access to this life-saving treatment for patients” explained Susan Walsh, PID UK Director.

The objective of the Study is to quantify and measure the impact of the different immunoglobulin treatments adults take to manage their PID. “At IPOPI we believe it is important to understand the impact that different immunoglobulin therapies represent in patients’ daily lives to better assess the quality of live these patients actually have. The study will also provide outlooks on how to further improve treatments and enable patient representatives to have quantitative data they can use in their advocacy and educational activities” said Johan Prévot, IPOPI’s Executive Director . The study will soon be launched in other 10 countries and is sponsored by Baxalta.

Should you be a patient in the UK wishing to participate in the study, please refer to Susan Walsh at hello@piduk.org.